What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com

Monday, January 19, 2009

"It's a still life watercolor. Of a now late afternoon" Simon and Garfunkel

As the sun shines through the curtained lace

And shadows wash the room.

Simon And Garfunkel

I am moving very slowly through this times. Horse latitudes can make for bad attitudes.

I am waiting for the flurry of activity in late February and early March. Will the secrets be pulled out from the shadows of my ever churning gut? Will the nodes hold still long enough to be measured by the Computed cuts (Tomograms) made by millions of .25 cm. xray beams casting their shadows? Will the CT scanner read my internal tea leaves? (I drink enough of the stuff) It would not be unusual for my cancer to make its encore appearance deep in my belly, in my mesenteric nodes. What a stinker!

Or will a core of bone achingly sucked from my hip tell the tale? Hope not, because than would mean the a mere mortal, the pathologist aided only with a good microscope could see funny looking cells when he peers though his instrument. That means maybe 1% or more of the marrow is cancerous. That would mean it is doubling quickly. Lower levels of cancer are tough to catch with a microscope. But not for a laser beam and a computer, especially if the cells first have been tagged with 4 glow-in-the-dark antibodies. This four color flow cytometry can find one in 10,000 cancerous cells. If that is the only positive test, that means I have become MRD (minimal residual disease) positive. I was negative on December 1.

Let me clear on this. If I become MRD+, or if my nodes show growth, it does not mean my cancer has reoccurred. No, no no no. It means it was never gone. It was hiding at levels or places beyond our ability to probe. Not that that is a bad thing. If it wants hide for the next 40 years in some dark recess of my gut or some warm niche in my marrow, let it. It is only when it ventures out into the light of day that it causes problems. It doesn't play well with others.

Meanwhile, my life is on hold. If there is a trace of evidence of an unwelcome reappearance of the malcontent clone, then I headed into heavy therapy, likely a redo transplant. The only clarity achieved would be that treatment is definitely needed. There is still a deep fog surrounding what to do to deliver the coup de grace to these evil monsters. If on the other hand, March comes and goes like a lamb and shows no re-growth, I would like to plan my return to the visceral world of caring for patients. If my docs sign off.

So on one hand, a return to the world I love and miss, and on the other, I venture deeper into the dark side, fighting death with near death, and rebirth.

This is bigger than the seventh game of the Stanley Cup. Heck, it's even bigger than the gold medal game in the Olympics.

Actually I am OK with either outcome. The call to action or the all clear.

I can't spend much time worrying about it. Better to live here than in the future. Here there is blissful ignorance of any changes in my bones or nodes since Dec 1. Enjoying the increased freedom and my few hours of good energy. Enjoying being alive. Now.

It's all pretty sweet, like biking at the beach today. No snow here!

This will be my first and last jump through these three month hoops. Waiting is not a life strategy that fits my temperament. It is nowhere as a long term approach. It makes senses for now, with so much craziness soon to be the air concerning my future.

I have said before that the price of freedom is eternal vigilance. I will be retested frequently, probably every three to six months. I don't want the Santa Ana winds blowing up a wild fire. I want to douse this when there is just a few embers. I want a pre-emptive attack. Again. That doesn't mean quietly waiting for the other shoe to drop. While I will be keeping one ear to ground, I will be rejoining the work world, knowing that I might need to leave to fight a few more rounds at a moment's notice.

No reason to sit on the sidelines, even it you know there's a good chance you might be benched sooner than you want.

3 Comments:

May your rejoining of the work world be a smooth landing and a safe transition.

An aside: I've been singing this Simon & Garfunkel song ALL DAY, ever since reading your post. I don't know whether to thank you or stop following your blog. Kidding. I love the song, but once it got in my head, it just kept playing over and over. Good choice!

It's both aggravating and perfect that our life stories unfold one page at a time. On one hand, it would be nice to know what is waiting down the road so we could always be ready and make the perfect choices, but then wouldn't we always end up thinking about tomorrow and missing out on today? I love that you are writing on every page of your life story, March will be here soon enough. I do hope you get to go back to work soon. I know your patients must miss you so much, and by now you probably miss even your problem patients! And if you miss the snow, I would be happy to send you some. We have PLENTY!!!

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About Me

BkoffmanMD@gmail.com
A family doc and husband of 1 and father of 4 and grandfather of 3 who loves his family and his work. I live with no TV and no microwave, but wouldn't last a minute without friends, art, music, books and the beach. Hockey, good jokes and exotic travel are pretty important too. Writing, Talmud and Zen give meaning to my life. My diet is organic vegan, often raw. I hope the blog makes the load lighter and the path both safer and more fun for those who read it or are going to similar places. I want to help. I crave your comments. If you are new to the blog, check out the portrait my son Will painted (it is the first post), and my very first text post.